POS0794-HPR SNAPS JIA - SURVEY OF ADOLESCENTS’ NEEDS AND PARENTS’ VIEWS ON SEXUAL HEALTH IN JUVENILE IDIOPATHIC ARTHRITIS
Authors: C. Savel, A. Chausset, P. Berland, C. Guiguet-Auclair, L. Cabane, B. Fautrel, P. Gaudin, P. Guillot, G. Hayem, D. Lafarge, S. Malochet, E. Merlin, N. Peziere, C. Sordet, S. Tropé, A. Tournadre, J. D. Cohen
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> According to the world health organization, sexual health (SH) is "a state of physical, emotional, mental and social well-being in relation to sexuality". Studies on the impact of juvenile idiopathic arthritis (JIA) on SH are scarce especially during the critical phase of adolescence. We can ask ourselves: are health professionals (HP) "good" interlocutors for JIA patients? <h3>Objectives</h3> We aimed to determine the expectations of JIA adolescents (10-19 years) and the perceptions of their parents regarding exchanges with HP in the field of SH. <h3>Methods</h3> A multicenter survey was performed in nine French rheumatology centers and three patient associations from September 2021 to April 2022, among JIA patients, aged 18-45 years and their parents. On the advice of two child psychologists and a psychiatrist, we interviewed an adult population to obtain convincing data about their adolescence with the necessary hindsight on the subject. Self-administered questionnaires were designed (for JIA patients and parents) after an extensive literature review and experts' consensus and distributed to participants. <h3>Results</h3> 76 patients and 43 parents completed the anonymous questionnaires. Most patients were women (75%), with a mean age of 26 (7.2) years and an education level higher than high school (89%). Parents were mainly mothers (88%), with a mean age of 54 (5.6) years and an education level higher than high school (56%). Half the patients considered that JIA impacted their love life. The main causes were body complexes (46%) and low self-esteem (40%). The impact on their sex life was not clear-cut. Love life was discussed with parents for 52% and sexual life for 20% of patients. 59% of patients reported they were comfortable to discuss SH with an HP (yet, only 26% had done). Their main sources of information were referees (at school (46%), family (43%)) or social networks (34%). If patients reported that SH has been discussed, it was mainly when the HP was proactive (56%), with the hospital rheumatologist (50%), from a biomedical perspective. Focusing the needs for optimal care, patients and parents agreed to address SH during an individual patient education session in hospital (51% vs 35%), a regular consultation (47% vs 53%) or a dedicated consultation by request of the adolescent without parents being informed (38% vs 21%). Most patients and parents agreed that the HP should be proactive (78% vs 70%). At hospital, for patients, the most competent or the most affordable HP were the gynecologist (68%; 47%, respectively), the rheumatologist (55%; 41%), and the psychologist (53%; 39%). Patients and parents both considered that a peer expert would make patients feel more comfortable (38% vs 37%); however, contrary to patients, fewer parents point out their skills (46% vs 25%, p&gt;0.0276). The opportunity of a suitable moment (64% of patients vs 53% of parents), an HP comfortable with the subject (59% vs 53%), and availability of brochures (45% vs 49%) seemed to be helpful for both. The only statistically significant difference concerned HP gender, less cited by parents (7% vs 43%, p &lt;0.0001). The use of digital resources was significantly more cited by patients than parents (video information (29% vs 9%, p=0.0127); smartphone application (25% vs 9%, p=0.0372)). 79% of patients were looking for general information (impact of JIA and treatments on sexuality), discussion (68%), reassurance (65%), and listening (51%). General information (58%, p=0.0158) and discussion (39%, p=0.0022) were significantly less cited by parents. <h3>Conclusion</h3> To our knowledge, this is the first study to address the SH needs of adolescents with JIA. HPs should take up this real need about SH, especially in hospital for adolescents and their parents. Indeed, there are expectations directly linked to the specifics of the disease. The main difference between patients and parents would be the use of digital tools. There could be an interesting vector of communication with adolescents if the sources are reliable and parents reassured about their content. <h3>Acknowledgements</h3> This work has obtained the financial support of the French Society of Rheumatology. <h3>Disclosure of Interests</h3> None Declared.